Hi all, So great to find you!
After a 2nd round of severe headaches I got an MRI this weekend and yesterday my doctor told me that the MRI showed an AVM.
She referred me to a neurosurgeon.
But, whatever happens with that, I still have these tremendous headaches and I wonder if anyone has had these? I also have very strong neck pain, though I believe it's muscular as it has been going on for years and massage and chiro usually help with that.
I am looking for any ideas about how to deal with the headaches. Has anyone had these headaches? They feel like fire. Like my brain is smoldering in a fire. Such a bummer and advil & tylenol help but don't give full relief.
Unfortunately, headaches are very common with AVMs. Patti one of the moderators on here, posted some of the medications she avoids because of the bleed risk. They were Aspirin, Ibuprofren, Advil, Sudafed (OTC & Rx), Omega 3, and Magnesium. (I know pretty much everything except Tylenol I think). BUT we have sub groups that have much more information about medications then I can give you. Also, if I remember right Cindy developed a comprehensive list of nutritional do's and dont's that may be helpful as well. The sub-group you may wish to join is at http://www.avmsurvivors.org/group/medicationwhatissafe.
There are a variety of other groups that you may wish to join as well. I suggest success stories... that's always great to read. :J If you have any questions don't hesitate to ask. Oh and there is a comprehensive list of questions to ask your doctor (since you were just diagnosed) at http://www.avmsurvivors.org/forum/topics/questions-for-my-neurosurgeon. If I haven't said it before, welcome!
I nave liked Tylenol because overtime it does damge your kidneys and I have seen reports that it can also hurt your liver do now ya got me worrying about Advil, but I always try coffee alone 1st since caffeine works great on migraines and the combo of heat and caffeine has worked great on headaches as well, hey its cheap & worth a try.
ya? i read something about advil being contraindicated because it thins the blood...? that said i can't imagine not taking it. i take it every day for my neck aches. hmmm. thanks for the reply, shnozzagauges ;)
Any NSAIDS are generally not a good idea with an AVM because they do thin the blood. Anything with ibuprophen (motrin) or aspirin you definitely want to avoid.
After my craniotomy I had horrible headaches. Actually for me part of the problem was a rebound effect from Percocet which contains acetomeniphen. Tylenol like products give me a worse headache after about 24 hours. I started working with relaxation and meditation and found that it helped a lot. The book Natural Pain Relief by Shinzen Young helped me. I know it is so hard to get through the pain. Distraction sometimes helps too.
You are very welcome. :) I know that headaches are awful, but bleeds can be worse and even life threatening. It is awful to hear about the effects of some medications that are supposed to helpful. But hang in there. Like I said, headaches are unfortunately a common thing and I'm sure someone member on here has some great advice to give. Best of luck to you and remember, we all got your back (some 4100+ of us). :J
Much like what has been said by others, Advil and other NSAIDs are something to try to avoid, as are caffeine, alcohol, salt and anything that is known to thin the blood and/or increase blood pressure.
Prior to having my AVM diagnosed, I too had years of dealing with a stiff neck and eventually a killer headache that could not be treated with standard pain killers. Ultimately, the only thing that got rid of the headaches were prescription pain killers and a week of steroids to reduce the swelling. After my surgery to remove the AVM, the stiffness in my neck all but completely disappeared and my headaches continued to become less frequent and severe over the years. I did end up spending about 6 years avoiding the items that I have listed above before finally being given the "all clear" by my neurosurgeon and neurologist.
I was in th hospital once for a 5 day migraine and none of the meds they gave me worked. A nurse suggested we try an ice pack on my forehead and another one on the back of my neck...... It worked!!! You may need to do it every couple of hours until it stays down. To this day, that's what I do for my migraines. It doesn't always take it completly away but, it does make it a lot more bearable.
I have been put on Verapamil er 180 mg two times a day. I hate to say this but I was found I had over dozens avms at one time in the core of my brain . I was only allowed to have the new gama knife and it takes two years to get you where you will end up. I stayed in school trying to keep my mind sharp and the burning never seems to stop I can press against that spot and it will give me some releife.I have found out everyone is different a friend of mine her husband had no ideal and just droped dead. I put it in gods hands and so far DR.Takack and Dr. Jenrette from MUSC have saved my life. I forget a lot and I have to do a lot of repeats to get it in . God bless. I have to say it was a strange feeling when they went into my brain I was awake and watched it on a lot of big screens.They put a start in my leg area where I felt no pain. I am 2 and half years out now. I will not give up so god bless you all.
Interesting that the neck might be related to the AVM....I thought it was it's own thing. Thanks for sharing your experience, Jake. I'm glad to hear that you're doing so well!
Hey Gaahla, Welcome...first about the headaches...Tylenol & Advil have never helped me much either, except for little headaches. I once got a tip using ice packs, similar to Ben's. I use the soft gel packs, (not ice cubes in a baggie or towel) and hold it on the back of my neck or my forehead. But, I also fill the tub a few inches with really warm water and put my feet in there. I sit on the edge of the tub, play some nice music, soak my feet in the warm water & hold the cold pack on my head. Sometimes I use 2 packs (forehead & neck). It seems to draw the ache right out of my head!!!
Now about the AVM...when you go to the neurosurgeon, I agree with Suzy, check out the link with some ?'s which will help prepare you & take them with you.
Instead of percocet you can get percodan which is the same thing but no Tylenol/acetomeniphen just like loratab and lorrasette that’s why those meds will have a strength rating? of say 10/500 which in percocette it means 10Mg of the pain medication which in percosettes I believe it is oxicodene & 500mg of Tylenol or you can get 15 or 30 mg pills of roxicontin which has no Tylenol or asprain in it.